By Alison Barkoff, Performing the duties of ACL Administrator and Assistant Secretary for Aging
Every March, ACL joins the National Association of Councils on Developmental Disabilities (NACDD) and its partners to observe Developmental Disabilities Awareness Month (DDAM). This year’s theme, “A World of Opportunities,” focuses on ACL and NACDD’s shared goal of removing obstacles to community living faced by people with intellectual or developmental disabilities (I/DD). ACL is committed to creating inclusive communities where everyone is valued and can do well and succeed.
More than seven million Americans have I/DD. Increasingly, the expectation of people with I/DD and their families is that they will have the opportunity to live, work, and fully participate in their communities. Over the last 20 years, the number of people with I/DD who live in institutions or other large congregate settings decreased significantly, and now the vast majority live with their families, in their own home, or in some other community living arrangement. More than ever, people with I/DD are our classmates, neighbors, co-workers, and friends. And the new generation of youth with I/DD expect even more as they become adults — they want to live independently, have careers (not just jobs), get married, and have their own families.
Yet despite these gains, people with I/DD continue to face barriers to making these goals a reality. ACL is working alongside our partners in the disability networks to tackle these issues, with a focus on initiatives that we believe will have the biggest impact on the most pressing issues that affect people with I/DD and their families. To kick off DDAM, I want to share about one of them.
Increasing access to home and community-based services
To access this world of opportunities, many people with I/DD will need services and supports to help them live and participate fully in their communities and achieve their own goals. These may include case management, personal care services, accessible transportation, financial and budgeting support, behavioral health supports, and support with obtaining and sustaining employment. These services and supports are provided by direct care professionals, often through Medicaid’s home and community-based services (HCBS) programs.
But there are not enough direct care professionals to meet the demand for these critical services and supports. Low wages, lack of benefits, limited opportunities for career growth, and other factors have resulted in a long-standing shortage of these critical professionals. Today, more than three-quarters of service providers are declining new participants, and more than half are cutting services. As a result, many people who need services cannot get them, and those who do receive services often experience disruptions and inconsistent quality in the services they do get — jeopardizing their health and safety. This dire workforce shortage threatens to reverse decades of progress in community living.
To begin to address this important issue, ACL established the Direct Care Workforce (DCW) Strategies Center in September 2022. NACDD is one of the several disability, aging, and workforce partners involved in this initiative. The Center provides technical assistance to states and service providers and facilitates collaboration with stakeholders to improve the recruitment, retention, training, and development of direct care professionals.
Earlier this week, the DCW Strategies Center launched several new initiatives, including two technical assistance opportunities to help states expand and strengthen their direct care workforces; a webinar series for states and stakeholders focused on a range of direct care workforce topics; and a national hub to connect states, stakeholders, and communities to best practices and other resources related to the direct care workforce. These initiatives are an exciting step forward in building our national capacity to support community living.
A strong system of HCBS is essential to opening a world of opportunities to people with I/DD. ACL recognizes the critical role that direct care professionals play in facilitating access to this world — and why urgent and sustained action to support them is needed.
ACL, alongside our network partners, works hard every day to move us toward a world where all people with I/DD have the same opportunities as everyone else to be fully included in community life, to truly thrive, and to succeed.
Throughout the month of March, as we observe DDAM, we’ll be discussing other important programs that ACL is developing to address issues critical to the DD network/communities. Stay tuned!